I'm a 40 year old mom to three wonderful kids who lives with chronic migraine, fibromyalgia, depression and anxiety. This blog is my personal diary, platform for advocacy, and sounding board to anyone willing to listen to how chronic pain affects a person and a family. Come and follow me on this journey of discovery where I seek to find the best way to live a full life within the restrictions of pain.

12 January 2019

Will The Day Ever Come

For the last 13 years, I have been waiting for the day when things will get better. A day when a medication actually works, or for the very invasive neuromodulator implanted in my body to lower the pain and frequency, or for the 31 injections I get quarterly to bring me back to being episodic. Nothing has truly worked for me. In truth, my particular case of intractable migraine has always been resistant to medication, or anything else for that matter. But, with each new approach comes a faint hint of hope. Maybe this one will be the one. And like clockwork, it fails me and I'm back at ground zero.

The toll of Aimovig increasing the severity and frequency of attacks and plummeting my cortisol levels to practically zero creating immeasurable fatigue has been immensely devastating to both my physical and emotional well-being. I had good expectations of the new CGRP medications. Now I am scared of them. What will be my body's response to the others if this one was so horrible? To have a neurologist lie to my face with false contraindications of Botox and anti-CGRPs to avoid giving me the injections and then blame me for my pain was infuriating. He ultimately was fired and had a grievance filed against him. Then to try a new preventive that only dulled the pain but mostly made me feel lightheaded, dizzy and nauseous 24/7 made me feel utterly defeated.

I have no reserves and the depression demons are constantly lurking in the crevices of my psyche. They had an awful good time yesterday making me feel stupid, useless, like a failure, and hateful of who I am. I'm sure they got their kicks watching me bawl my eyes out in a gutterly way, scaring my husband who could not console me. I could not sleep as I did not want to be in my skin; in this body. I'm constantly at war with it and it wins most of the time. Will it end in my utter defeat or is it possible for me to conquer it? There are always more questions than answers.

I am tired of authoring emails like this one...

As I wait to find that one treatment to help me, I continue to experience severe cognitive impairment, memory loss, aphasia and slow processing speeds. The noise of life is loud and overbearing. I can barely deal with the bombardment of pain and confusion my body presents me with each morning, let alone what life is preparing to throw at me for the day. I dare to say what I deal with is not normal nor expected of anyone to continuously endure for well over a decade.

Every day I ask myself if the day will ever come when or if

I return to being episodic.

I will ever know what happiness feels like.

I will ever lose this weight.

I won't need to be on an antidepressant or take anxiety medication.

I will ever like the person I see in the mirror.

I will ever experience a normal life.

I will ever feel pretty without makeup.

I will feel like I am enough.

I will except me for who I am, flaws and all.

I will be brave enough to openly stand in my truth, even if it's ugly and raw and shocking.

I am not writing this for sympathy or to throw myself a pity party. I felt it was important to document what my reality is. Yes, I have had many positive things come out of being chronically ill, but they have always been overshadowed by pain. Deep, profound pain. It doesn't matter how the rest of the world views me if all I see is a broken and incompetent person.

I write this for whoever is going through this as well and does not have the courage or support to vocalize it. This is never easy for me to put out there. I risk scaring the shit out of my family members and close friends. Being a two-time suicide attempt survivor, talk like this puts those who love me in a fearful disposition. I also risk judgement from those who would classify me as being a weak and selfish individual. I DO NOT WANT TO HARM MYSELF. I just wish my life wasn't so hard and punishing.

At times I do wish the last attempt was successful. That's hard to say out loud and hard for others to hear I'm sure. But, I did say I was going to be transparent so, there it is. It doesn't mean that I want to die. It just means that I am tired. My feelings and experiences aren't unique and there are so many other people in the world whose lives are much harder than my own. But these are mine and they are tough to get through.

So far, 2019 has been disappointing. I am not very optimistic about how this year will play out. My one resolution is to be more honest about my struggles instead of covering them up with a smile and a fake response of being okay. I am not okay. I am far from it. I haven't been okay for thirteen years. There. I finally said it. And guess what? It's okay that I'm not and that you are not okay. Chronic intractable migraine + major depressive disorder + anxiety + spinal stenosis + panic attacks + financial instability + arthritis + fatigue + fibromyalgia + kids + marriage = NOT BEING OKAY MOST OF THE TIME.

This isn't a cry for help. Rather, a shout of admission validating my own experiences and anyone reading this who can unfortunately relate to this. If you are feeling overwhelmed and/or suicidal, I urge you to talk to someone. I have used the National Suicide Prevention Lifeline and the Crisis Text Line. They both helped me through very difficult times. There are several ways you can reach out and talk with a counselor. Text and online chats are also options if you don't want to physically speak with someone over the phone.

Remember that you are never alone during your darkest moments. Although you feel as though death is better than living, it is a very permanent solution to a temporary situation.

5 comments
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Stay away from the sound and keep yourself in a quite in a dark and quiet place can be used as prevention of migraine. Also, Yoga practicing and drinking ginger tea will keep calm and normal. Staying hydrated all the time is also important.Thanks for sharing this post. Keep up the good work.!

I am so sorry to hear about the lack of efficacy for you in all the treatments you have been through. I was diagnosed when I was 8 (I'm now 47), but mine are not as frequent as yours, although there were stretches with headache pain every day for a long while. As I type they are not as frequent, I can't really say anymore after being on meds for so long.

In my early 30s I began the journey with my GP and then neurologist of trial and error, for lack of any better description, to find what worked - a process you sound very familiar with. I worry about the impact of the medication, but the few times I have reduced dosages or tried to move away from 1 med perhaps I am reminded that I would be facing multiple headaches every week, if not daily for some stretches as I said.

I started Botox a year ago and it has made a big difference. So after a decade and a half of trial and error I now take two herbal supplements daily and two meds daily for prevention, along with the Botox. Two separate meds for the pain, Imitrex of course in both injection and pill form and another as well when needed. Stomache issues are a definite side effect of all the pills, but we all know that the alternative is excruciating.

I can say, that I function now at a nearly "normal" level. I can only hope for YOU that a similar cocktail of things exists out there to counteract your particular version of this problem. When you talk about the pain, it strikes such a cord with me, I know exactly what you describe. It is truly awful. Nothing like throwing up with a migraine. Describing what the pain is like to family and others always sounds like dark ages torture.

Anyway, I know that you know you are not alone. I feel for you, without a doubt, and I wish you tremendous luck on your journey to find the balance of things in life needed to counteract the chronic migraines that plague you. You can email me if you want the specific list of things I take, but I doubt it is anything new to you - you sound like you have probably already been there.

Hi, I feel your pain. I had 24 hour migraines several times a month for the last 10 years, and no one understands the pain, and nothing helps. I am writing to you to tell you that there is a way out, and I found it by accident a year ago. I tried a product (no drug, 100% natural) that my friend said would help me after my hysterectomy, and one "side effect" was that my migraine started to decrease. Month after month my migraine was less and less noticeable and after one year with this Product I only feel a light headache some times. I feel I have to help other women - we do not have to suffer. If you would like to know more please email me (hillroth@hotmail.com), wish you all the best, greetings from Sweden <3

Did you guys ever try using medicinal marijuana for severe headache or migraine? I'm really curious about this matter and wanted to ask if you guys have any experience using cannabis. I came across some article that says medicinal marijuana can help you cope with these types of problem and some other health issues. Visit this https://www.gyo.green/archive-seeds-stink-bomb-arc-stk-r.html I have 0% experience using cannabis so I'm hoping some of you guys can enlighten me and give me more information about this. Thanks!

Sadly your not alone. Like many other migraine blogs its like I could have written this article myself. I just got over a 60 day migraine only to have 2 free days and now i'm on day 18 of this current one. I've basically had the same migraine since April of last year. Nothing is working. I'm trying Aimovig and I already have had botox for years now. Aimovig so far hasn't shown any improvement for me. The cramps and constipation are awful. I think my next step will be to try one of the other CGRP drugs. Anyway...thanks for your post. Your doing exactly what I want to do which is raising awareness about what its like to live with this illness and help us become advocates.